Comp B-Improving the Care and Outcomes of People Living with SB

描述(由申请人提供)：阿拉巴马大学伯明翰分校(UAB)自成立以来一直致力于全国脊柱裂患者登记。疾控中心认识到登记的必要性和好处，以促进脊柱裂患者在所有卫生保健领域的进步，并建立了全国脊柱裂患者登记处。这项倡议的目标是改善医疗保健质量，并了解脊柱裂患者的人口统计和特征。从2008年开始，阿拉巴马儿童医院、阿拉巴马大学伯明翰分校(UAB)和辛辛那提儿童医院与归零地软件公司的程序员合作，开发了一种名为Webtracker的脊柱裂诊断专用电子病历(EMR)。WebTracker被设计成一个脊柱裂EMR，可以被临床普遍使用，也可以作为数据点的储存库，这些数据点将被用作嵌入EMR的注册表。UAB当时是由FOADD08-001资助的；该项目由9个地点组成，这些地点被选为将患者登记到登记中。这一供资周期于2011年结束，但遇到了一个新的供资机会，即FOA RFA-DD-11-005，其中选择UAB继续收集登记所列患者人口的纵向数据，并将诊所的新患者添加到登记中。截至2014年2月1日，UAB已收集了485名患者的数据，并自2009年以来完成了1364份年度报告。UAB在登记人数、纵向数据报告数量和登记合格患者数量方面领先于所有登记网站，登记的合格患者占登记合格患者的99%。UAB致力于继续收集我们诊所中看到的儿童和成人脊柱裂的纵向数据。这些数据将用于通过以下方式提高护理质量 通过比较参与诊所的干预措施和结果的差异来确定最佳做法。UAB还打算在患者过渡后的依从性、在泌尿外科管理中不同诊所之间的治疗差异、特别是尿动力学测试以及神经外科管理中的差异等方面提出假设。这些研究将使用国家脊柱裂患者登记数据完成。

DESCRIPTION (provided by applicant): The University of Alabama at Birmingham (UAB) has been committed to the National Spina Bifida Patient Registry since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with Spina Bifida and established the National Spina Bifida Patient Registry. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with Spina Bifida. Beginning in 2008, The Children's Hospital of Alabama with The University of Alabama at Birmingham (UAB) and The Children's Hospital of Cincinnati collaborated with programmers from Ground Zero Software to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida called Webtracker. Webtracker was designed to function as a Spina Bifida EMR that could be used universally by clinics as well as to be the repository for data points that woul be used as the registry which were embedded into to the EMR. UAB was then funded under FOA DD08-001; which consisted of 9 sites that were selected to enroll patients into the registry. This funding cycle ended in 2011 but was met with a new funding opportunity, FOA RFA-DD-11-005 where UAB was selected to continue to collect longitudinal data on the patient population included in the registry as well as to add new patients in the clinic to the registry. As of Februay 1, 2014, UAB has collected data on 485 patients and completed 1,364 annual reports since 2009. UAB has led all registry sites in number of enrollees, number of longitudinal data reports, and the number of eligible patients being enrolled at a percentage of 99% of eligible patients being enrolled. UAB is committed to continue the collection of longitudinal data on children and adults with Spina Bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB also intends to develop hypotheses in the areas of patient compliance after transition, variation of treatment amongst clinics in urological management; specifically urodynamic testing, and variation in neurosurgical management. These studies will be completed using the National Spina Bifida Patient Registry data.